Last Blast

Joe's Last Blast was read today by good friend Jeff Rubin at Joe's Celebration of Life Ceremony at Faith United Methodist Church. Thank you, everyone, who came to remember Joe. -- Jan and family
******************************************

This is not the final blast I hoped to write.

My plan was more like this: When I had been in remission for a few years, I would wrap up this writing project with some carefully crafted post about lessons learned, how going through these troubles had made me a better person, blah blah blah. It would have been witty and full of insight and written while on vacation with family in New England. Maybe it would become a book and I would go on tour.

Instead, I have to come up with something much sooner than planned, and I have to write from a very different place. I'm afraid it's going to fall short of my earlier aspirations for quality.

I am grateful for what I learned about myself and about living and about how much love and support that was in the hearts of so many who know me and my family. I do feel that the lessons would have been just as effective without this particular ending, so my gratitude is tempered.

I am happy that my writing found an audience that found it valuable. Many mentioned how much my writing about my experience with leukemia helped them or changed them, and it feels good to know I was able to do that.

Some mentioned that they didn't know I had such a great sense of humor. That hurt a little, since I always thought I was funny.

The many messages I have received all along and especially during the final phase of my illness make it clear we affect many more lives than we know. Some of it is intentional — teaching, coaching, parenting, working — but much of it is incidental, based on how we live.

I can't write a last blast without thanking the many friends, both recent and from way back, whose support has made these hard months since January 2011 much easier for me and my entire family. My family and I are so thankful.

And I am thankful to have such a supportive family, from the sibling visits (and stem cells!) to my parents practically taking up residence in Illinois as needed. And to have seen my two sons develop for an extra couple of years, and to see in both of them the ability to succeed at whatever they put their minds to.

And above all I am grateful that Jan overlooked the clumsiness of my marriage proposal, and the substitution of a treadmill for an engagement ring, and accepted me for what turned out to be 26-plus years of a rich marriage. I could not have found a better match: common interests, shared goals, different strengths, and unconditional love. She definitely got the short end of the "in sickness and in health" clause, but she has handled it beautifully.

I have noticed the coincidence between how long we've been married — 26-plus years — and the length of a marathon, an event that has percolated through our life as a couple and, in the last few years, has given Team J a lot of time working closely together, a source of joy.

26-plus... as many years as a marathon has miles, though it felt as easy as a 5K. If only we had been working on a 50-miler.

I don't know what else to say.

Enjoy the blueberries.

Rest in Peace, Joe Seeley

Joe's 21-month fight against leukemia ended Saturday night. He was surrounded by our sons, his parents, Paul's best friend Andy, and me when he passed peacefully. Last Friday, Joe had moved into hospice care at home, after receiving final transfusions at Carle, so we knew we didn't have much time left with him. Each day this week was a treasured gift.

A ceremony to celebrate Joe's life will take place on Saturday, November 17, at 10:00 a.m. at Faith United Methodist Church on Prospect Ave in Champaign. We hope many of you can join us. Joe has written a final blog entry that we will read at that ceremony and then post on Joe's Blasts.

To carry on Joe's long-time commitment to youth soccer in Champaign-Urbana, we have established the Joe Seeley Scholarship Fund with the Illinois Futbol Club (formerly LISC). In lieu of flowers, donations can be made to "Illinois FC" with "Joe Seeley Scholarship Fund" on the memo line of the check, and checks can be mailed to the following address:

Illinois FC
Attn: Joe Seeley Scholarship Fund
2310 N. Willow Rd.
Urbana, IL 61802

We are so grateful to all of you who have faithfully followed Joe's blog during his journey. Your comments about Joe's posts meant a great deal to him, and buoyed him during his toughest times.

We are also grateful to Joe's doctors at the University of Chicago Medical Center and for the care he received recently at Carle.

Lastly, we cannot thank enough everyone who has supported Joe and us during his illness. Your many acts of kindness helped us more than you may realize. ---

Jan Seeley (the shorter half of "Team J")
= = =

Liquid Diet

A flap of gum has grown over the lower wisdom teeth on each side of my mouth, so I cannot chew. (My previous statement that my gums were swollen was incorrect.) After consulting with oral surgeons and my other doctors, we have decided there is no good solution under my circumstances, or at least no solution better than living with it.


So far, I have been relying heavily on thinned hot cereals, pureed bean soups, banana ice cream shakes, yogurt and fruit smoothies, and a commercial nutritional drink with a lot of calories, protein, and fat. Though I'm generally in favor of real food, the commercial drink is very convenient and very chocolatey.

I have been feeling sorry for myself about needing to get all my nutrition in liquid form from now on. I miss eating solid food a lot.

Then I saw that people with broken jaws face the same problem. This gave me hope that I could find a tasty variety of nutritional drink/smoothie/shake recipes.

Some of what I found sounded terrible. For example: pizza, hamburgers, Chinese food, or Mexican food, plus some extra liquid, put in a blender and then strained. Also, baby food. I have been having problems with nausea and vomiting, and I get queasy just thinking about these. But if I get desperately bored with what I'm doing, I might have to give them a try.

I did learn about some promising additions like nut butters, hemp and flax seeds, and tofu. Those are probably where I'm going next to boost the nutrition of what I'm doing. Vegetable juice, too.

If you have some clever ideas for drinkable, nutritious, and tasty foods, please pass them along.

In Between

I have been home just over a week, since the Wednesday before Labor Day. It's so much better than being in the hospital.

I have not been in a writing mood. No, that's not quite right. I have wanted to write — letters to family; blasts to keep telling the story. But I have serious writer's block.

= = =

All of my siblings, plus my brother's wife, Kate, came to town the day before I came home and stayed as long as their schedules allowed. They brought some pictures from our childhood to help us reminisce, which generated some smiles. We got in a live game of Scrabble with a few of the regulars from our family gatherings in New England, which was also fun, even if I did come in third of four, and Kate won as usual.

Unlike the last sibling infusion in early July, this visit was a good-bye, so there was a lot more crying.

= = =

This is a very strange time, the days after the last day on which I could see many more years forward in this life, no matter how unlikely.

I know people have enjoyed and admired my positive outlook, humor, and willingness to share what's going on, often in great detail. About all I'm willing to share right now is that I'm not feeling much like that person these days.

That, and my gums have recently swollen to the point that I need to take in liquid foods only. We're trying to see if there's something short of extracting teeth that we can do to ease the problem. Extracting teeth doesn't feel right for someone where I am in life — it would mean going back into the hospital, the wounds would probably never heal because of my immune system, it would open up additional avenues for infection. At this point, I'm aiming for the best possible days, not as many days as possible.

= = =

The response to my previous blast, in which I laid out the path as we know it, has been humbling and comforting. Thank you.

No Happy Ending

The biopsy results trickled in over the course of Thursday.

First result: Only 2% blasts! That sounded really good, since I had been at 20%. We were warned that it might not be all that good, especially if the marrow was essentially empty (hypocellular).

Second result: Less hypocellular than before! Lots of immature cells. Maybe things are moving in the right direction, depending on where those immature cells are headed.

Third result: Almost all of those immature cells carry the deletion-7 abnormality that marks my leukemia. We have lost.

Fourth result: Due to some miscommunication between my local and Chicago doctors, we hang a shred of hope on the belief that the deletion-7 number is premature. But it isn't.

If we hadn't done the biopsy, we wouldn't know it was over and we would be hoping for a highly unlikely five-day break in the fevers at just the right time to get in another (fruitless) cycle of the clinical trial.

Instead, we get to plan my final days, to the extent possible, and think of ways to celebrate my life. Not everyone gets to do that.

Once we figure out the hospice arrangements, I'll leave the hospital and head home. I can keep taking my medications and going in for transfusions, until a fever sets in. If my time in the hospital is any guide, that might not take long. The fever precludes transfusions, and I won't be coming back into the hospital for IV antibiotics to try to get it under control.

My parents are already in town and have been since I re-entered the hospital. My younger brother and his wife had already been planning to visit this week, so they'll be here. My sisters are coming, too. The more family, the better.

We'll do our best to make me comfortable by controlling the fever and taking various narcotics. At some point the infections or a stroke or some other failure will be the end. I am strongly hoping it's in my sleep, without drama or trauma. We've had enough of that.

I have mood swings: acceptance, melancholy, peace, grief, gratitude. They come and go, sometimes within just a few minutes of each other. No anger.

Acceptance is usually highest in the morning, for some reason. Maybe I've been having those pleasant dreams in which I'm healthy, so I'm more open to the it's-all-part-of-life and we-all-get-here-eventually outlook when I first wake up, and less so as the day goes on and I have more time to think about the sadder sides of my current reality.

Now I Can Talk About It

Still in the hospital. The fever that landed me back in the hospital has been under control for the day. So that's good.

But we're also dealing with several varieties of bad.

For this hospitalization, I have been designated a fall risk. I don't know how they determined that, but I don't blame them for being cautious on my behalf. As a fall risk, I have a bed alarm that would go off if I got out of bed to use the bathroom without assistance, or tried to make a break for it. I also wear yellow socks and a yellow "FALL RISK" wristband, in case I disable the alarm and make a break for it. When Jan is here, they turn the alarm off so that she can get in bed with me. Usually, she sits at the foot of the bed so she can look at me. Sometimes, she curls up there and takes a nap.

No day can be all bad when I have this
gorgeous woman on my bed.

I have trouble keeping food down. I'm taking Marinol to enhance my appetite and Zofran to manage nausea, but the vomiting comes on so unexpectedly and without any preceding nausea, that we can't time the Zofran to be reliably ahead of it. Besides being unpleasant, regularly throwing up interferes with my nutrition, which further weakens me.

Medically, the worst of the bads has to do with my vulnerability to infection. I was scheduled to start cycle 2 of the trial this coming Monday, but it's too soon to stop the intravenous drugs that are addressing the undiagnosed infection(s) behind the recent fever. So maybe the week after, if no fevers return. And the fevers have to stay away during the week of treatment. And with my immune system in its current state, that's a shaky proposition.

More bads, psychologically, are the unknown length of the treatment and the low odds of success. My previous treatments, no matter how unpleasant the side effects, always had relatively short durations (maybe a couple of weeks) and the confidence of my medical team. It's a lot easier to tolerate distress when you can count the days. This treatment could take months to show signs of success, and more often than not, it doesn't.

All of the above has caused us to step up the pace of learning about palliative care, which is what you do to remain as comfortable as possible once you decide to stop treating whatever is killing you. Which, unfortunately, is a decision we may have to make soon, especially if I can't shake the fevers or if some other complication shows up, like one of those killer fungi I had each of the previous rounds of treatment — there won't be any emergency surgeries this time. I am having a bone marrow biopsy early next week to try to gather additional information. It won't make the decision about continuing or discontinuing treatment easier, but it may make it clearer.

In the meantime, my plan is to stay in the hospital receiving IV antibiotics for as many days as possible, with a discharge right before my next chance at starting cycle 2. It's not all bad. Jan spends a lot of time here. We reminisce, we cry, we just hang out without saying anything. Best part of my day.

In

Due to a fever on Tuesday night.


I don't want to talk about it.

Out

I was released from the hospital Friday evening, after managing to keep my temperature (just) under 100 for a couple of days.

I still spent most of Sunday at the local hospital getting transfusions, and most of Monday going up to Chicago and back, but at least I got to sleep in my own bed.

In addition to the comfort of being in my own bed, I also got to sleep with the windows open on some really great nights for sleeping: cool, light breeze, crickets and other night chirpers, a gentle rain one night. The hospital can't provide any of that.

Healthy Dreams

My Olympic fortnight has so far been filled with refillings of my tank: sometimes platelets, sometimes red blood cells, sometimes both. Last week, I received transfusions each day from Monday to Friday. That wasn't the plan, but scheduling problems kept turning what would have been a long day of transfusing into two only slightly shorter days. Fortunately for the sake of time, all but the Monday transfusions happened locally instead of in Chicago.

Ideally, I would only need transfusions every other day, and maybe even just three times a week. Ideally, I wouldn't need transfusions at all, but where we set our sights depends on where we are.

On Sunday, another planned long day of transfusions turned into what is now a hospitalization of three days and counting. Toward the end of the session, I started running a fever above the standard threshold of 100.5. That temperature means automatic admission when you are neutropenic and have as few white cells as I do, because an infection can easily get out of control.

After admission, I started getting an additional antibiotic, and we converted another medication that I had started having trouble swallowing from tablet form to intravenous. They also started testing for various infections: lungs, blood, urine. So far, nothing has turned up.

The hospitalization hasn't been bad. I'm at the local hospital, so it's easy for family to visit. Jake and Paul are back from their annual summer family visit to New England, and my parents are also in town, so there's plenty of family. And the nightly interruption schedule is more sleep-friendly than it is in Chicago.

There are usually two criteria for release from the hospital when you have been admitted for a neutropenic fever. The first is to be fever-free for 48 hours. I keep running up over 100 in the evening, so that 48-hour clock keeps resetting. The second is for the neutrophil count to get up to a level that offers some protection. It's been weeks since I had that many, and it will be weeks before I get that many again, if ever. Therefore, we're waiving that criterion, and I only need to meet the fever rule.

When I am not being transfused, and even when I am, I usually feel like sleeping. I wonder how much is the push from being anemic and otherwise quite unwell and how much is the attraction of being asleep. I don't remember most of my dreams, but the ones I do remember feature a me who is healthy. I'm running alone or with friends, on trails or on the track. I'm trying to figure out how to unlock the gas tank on a bizarre foreign car. I'm being shooed out of the kitchen as I forage during meal prep. It's a relief to not be sick, even if only for a few hours at a time.

I'll take those dreams as visions of the future and not just fever dreams.

Lentius, Infernus, Infirmus...

We have been enjoying hours and hours of Olympics. Seven channels!

At the moment, I am living a sad inversion of the Olympic motto: Slower! Lower! Weaker! I walk more slowly, my blood counts can't get any lower, and simple tasks (like taking a shower or climbing the stairs) leave me winded.

Unfortunately, the symptoms of progressing leukemia and the side effects of the clinical trial are hard to distinguish right now. So we can't tell if I'm benefitting or not. At some point in the next several weeks, we might see a turnaround in the blood counts. It would be great if it happened before the end of the Olympics, so that I could experience some Faster-Higher-Stronger of my own, with the right sound track on television. It would not take much.

Buying Green Bananas

I am three days into the five days of injections that begin the first 28-day cycle of the clinical trial. So far, so good.

The day before the trial started, I had an uplifting experience and a scare.

The uplifting experience was a Meeting for Worship with a concern for Healing held by the local Quakers (my religious community). Since I am in isolation, my family participated via Skype. We had some technical difficulties during the hour, but it was good to see all those familiar faces doing the Quaker silent worship thing on my behalf. I heard afterward that when the meeting was over and we had signed off, the gathered Quakers hung around saying nice things about me, some of which were relayed to me. It was like being eulogized while still alive, which seems more useful than the usual practice.

The scare was a fever that climbed as high as 99.7. If it had reached 100.5, I would have had to go the emergency room, and my participation in the trial would have been postponed until the fever was controlled. Fortunately, the fever went away as quickly as it appeared, and we were able to begin the trial on Monday.

Monday was a long day. It started with Jan and me leaving Champaign shortly after 5:00 in the morning so that we could get to the clinic in Chicago by 8:00. Jan's best friend Maggi flew in for a much-appreciated 24-hour visit, joining us at the clinic not long after we arrived. I had a blood test which confirmed that my counts continue to approach zero. I had another EKG. Then I was called back to a reclining chair — chair 18 — in the infusion therapy room, which is a large room with a lot of chairs separated from each other by curtains. There are a few private infusion rooms, some with beds, but I guess I didn't rate. I spent about eight hours in that chair, except for bathroom breaks.


We heard that it took a couple of hours to prepare the injection, and we expected the injection to take place around 10:00. This would allow for the eight hours of blood draws we agreed to in the consent form. It took about four hours for the injections to be delivered from the pharmacy, so we only had time for six hours of blood draws before the clinic closed, at the same time that I was receiving a bag of platelets and a bag of red blood.

Ouch! Times two!

A nap with Jan was one of the best parts of a long day in chair 18

After a final blood draw around 6:00 p.m., the three of us headed to the apartment Jan and I rented for the week and ordered dinner from a Mediterranean restaurant. It was wonderful to be able to spend the day with Maggi, especially for Jan.


Maggi left at 7:00 a.m. on Tuesday. We were back at the clinic at 8:00, scheduled for another bag of red blood and the second day of injections. I got chair 18 again. There was no order for blood, so it took a while for the blood to show up, and it again took several hours for the injections to arrive from the pharmacy. We left the clinic a little before 1:00. Leftovers for dinner, and then a lovely walk along the lakeshore around sunset.


Wednesday was easy. We arrived at 8:30 and were done around 10:00, again in chair 18. It didn't make the injections hurt any less, and they are pretty painful, but it's nice not to spend so much time in the clinic.


Thursday and Friday may be a little longer, depending on what transfusions I need and when, to get me through the weekend before I return to the clinic on Monday to visit my doctor. I will probably get more transfusions Monday, and the current plan is to have a line inserted into my arm to make it easier to draw and receive blood. 


If we're lucky, there will be more blood tests and transfusions in the coming weeks and months than the veins in my arms can handle. Having this procedure is an act of optimism, like buying green bananas.

All Together (Nuclear Family Version)

Jake arrived Tuesday, cutting short by a few weeks his planned stay in Cambridge, where he was working at Harvard with his Haverford thesis adviser. He may continue to work for his thesis adviser into the fall. Having Jake at home will be good for each of us, in different ways.

Paul will benefit from having his big brother around: someone to play tennis or kick a soccer ball with, and someone to talk to about things he isn't comfortable talking to his parents about. The talking could have happened by phone, but it's more likely to happen, and to happen more often, when they're under the same roof.

We will all benefit from having another adult around the house: an additional cook, an additional shopper, an additional driver, an additional listener.

Jake will benefit from being able to help at a time when we need help.

There is only so much friends and family can do when they are one or two thousand miles away. We know they wish they could do more and be around more. We wish so, too. Most of our extended family lives near Boston, and it would certainly be easier on everyone if we were not the Midwest outliers.

Tick Tock

The past week featured two trips to Chicago, two visits to the local cancer center for platelet transfusions, and a decision to bring our older son Jake home for the rest of the summer and the fall.

Monday

The Monday trip to Chicago, with Jan, had the usual blood work and a meeting with my doctor, now back from vacation. My blood counts continue to drop and are now at dangerously low levels across the board: red, white, and platelets.

The gist of my doctor's message was that most people in my position would choose to keep seeking treatment, but we should think hard about how I want to spend what is, statistically, not a lot of remaining time. How much of that time do I want to spend in Chicago, maybe in the hospital, maybe suffering painful battles with infections, and all for a less than likely positive outcome? Where do we want to draw the line? That is a very hard question to answer, and we have not yet done so.

Then a nurse brought in a consent form for participating in the clinical trial we had heard about earlier, which is the only treatment option that the leukemia team thinks has some chance of success for me.

The drug is SGI-110. The protocol doesn't sound so bad: an injection a day for five days, with frequent blood draws on the first and last days, and a bone marrow biopsy on the last day. Then three weeks at home, waiting and watching blood counts. Then we repeat the cycle if there is any sign that it's helping. The main potential side effects are not anything that I'm not already experiencing: lowered blood counts, feeling tired, high risk of life-threatening infections. The injections are done as an outpatient, so the main drawback for us is the disruption of being in Chicago for five straight days.

Since the alternative is waiting at home for some disease or infection to take advantage of my weakened immune system and do me in, we decided that the treatment falls on this side of the line we haven't drawn yet. It may or may not work, and the odds are not in my favor, but it's worth a shot. So we signed the forms. The nurse was unsure whether I would be able to start in one week or two — the timing depended on the length of time since my last dose of prednisone, and she didn't recall whether that gap needed to be one week or two.

That was a sad ride home from Chicago. We talked to my parents and to Mara. We decided to ask Jake to come home from his summer job at Harvard, and to delay the start of his graduate work at Berkeley so that he could be home this fall. No matter how this turns out, it will be better for all of us to be together.

Tuesday

On Tuesday, we talked by phone to the doctor running the clinical trial. That raised our spirits, as she recounted some of the success stories they have had. She didn't sugarcoat the odds, but she did second our opinion that there's little harm in trying. We also heard from the nurse coordinating the trial that we would be starting the first cycle next week (July 16), which was another boost to our spirits. We made arrangements to stay in Chicago for four nights at the same place we rented in January and February, when I was out of the hospital but needed to stay close.

Wednesday

On Wednesday, I told my supervisor at work that they should be prepared for me to stop working. I have been working about 50% time lately, mostly designing user interfaces for web and smartphone apps. It is enjoyable work, and it keeps my mind occupied in a good way. They were already planning to hire an additional person to keep up with anticipated extra work. Now they can conduct that search with a different perspective about their future needs.

I went to the local cancer center for a platelet transfusion. My platelets were at 11 on Monday, and the Chicago team felt I should get some more in preparation for my Thursday biopsy, part of the screening tests for the clinical trial.

At the end of the day, we learned that I could not start the clinical trial for another week, on July 23. The nurse thought I had stopped taking prednisone a week earlier than was the case. This was discouraging. The longer we wait, the more time the leukemia has to build, and the greater are the chances of an infection taking hold.

Thursday

A friend drove me up to Chicago for screening tests for the clinical trial: a couple of heart tests (MUGA and EKG), some blood work, and a bone marrow biopsy. We won't get any results from this biopsy. Some of the samples go to the drug company that is sponsoring the trial, and the rest get frozen at the Chicago clinic for future research.

The nurse practitioner who performed the biopsy gave me her professional opinion on the return of my leukemia: "This sucks." So true! She also prescribed an additional antibiotic and, at my request, some sleeping pills.

Friday

Another platelet transfusion at the local cancer center, accompanied by my son Paul. I don't get the same boost in platelet counts that most people get from a transfusion. So not only am I not producing enough platelets because of the leukemia, but I'm also losing the ones I do make or receive, for some unknown reason. 

The outward manifestation of my low platelet count is that my lower legs are densely covered with tiny red dots called petechiae. My low red blood cell count causes me to be more tired than I have been recently. My low white cell count causes me to worry about every sniffle or ache — is this the start of some killer infection?

= = =

Was the account above hard to read? That seems fair — it was hard to write.

It is not easy to be realistic and optimistic at the same time. Realistic, because we have to prepare for the worst. Optimistic, because a positive outlook correlates to better outcomes, and because hope feels better than despair. On the positive side: I have some symptoms of GVHD, indicating that my immune system might still have some useful fight left in it, if the new treatment can slow down the leukemia.

The odds are against me, but that has been true before. The last time the odds looked especially bad, late last fall, I was in a hospital bed in Chicago battling a deadly sinus infection and leukemia at the same time. This time, I get to be at home: grilling on the patio, watching the Tour de France and movies with my family, doing useful work, taking walks in the neighborhood, holding and being held by my wife. This is better.

Triple Sibling Infusion

We typically visit New England in the summer, shortly before school starts. Our parents and siblings all live in the Northeast, with almost all of them in the Boston area. The trip almost always includes time in New Hampshire, just as the blueberry season begins there. We thought we would be able to do it again this summer, though we expected it to involve driving instead of flying to accomodate my still-compromised immune system.

With my relapse, there's no way I should be getting that far away from my doctors or getting exposed to extra people, so I will be staying in Illinois for the first summer in a long, long time. Maybe even for the first time since moving to Illinois 25 years ago. Paul will fly to Boston, and Jake is already there for the summer, so they will have to be our representatives at the annual summer family gatherings.

Since I had to cancel my summer travel plans, and to help ease the shock and pain of learning my leukemia was back, all three of my siblings flew out for a long weekend of hanging out, cooking, and yard work. And blueberries.

Mara tames some tomatoes.

There are always plenty of weeds.
Karl and Lauren take some of them out.

There is a U-Pik farm not too far west of town. Last year was their last year of being officially open for business, but they still let you come and pick and pay on the honor system. There are lots of weeds, and the bushes have not been pruned, and it's a little sad. It was also just shy of 100 degrees and very humid. But the late afternoon light was beautiful, making the scene look like a painting of an Italian landscape. And, of course, there were blueberries! Writing the perfect metaphor about finding beauty and sweetness in a day's dying light, in a blueberry patch succumbing to weeds, is left as an exercise for the reader.

Karl and others picking...

Paul picked the most.

I did not pick, an extension of my doctor's orders to avoid yard work. I roamed the rows finding bushes that were relatively loaded. It has been so hot and dry for the last week and a half that the berries were smaller than expected. However, they pack the flavor of a larger, plumper berry into a smaller volume, so they should make a good pie.

Joe holds Paul's bucket while Paul takes the picture.

Mara flips Karl's famous pancakes, some of which got to be blueberry pancakes.

Karl makes bread cuts fruit. Later he made some of his famous
oatmeal bread.

Lauren works on a blueberry pie.

As expected, the pie turned out great. I should have worn a hat!
I forgot that I don't need much hair to have a bad hair day.

Hints of Sunshine

We went up to Chicago today to discuss potential paths forward.

All of the paths start the same way, getting off prednisone as quickly as possible without triggering a dangerous amount of GVHD. I started the weaning late last week, and I am starting to have a little skin rash at the current dose of alternating 20mg and 10mg daily. The rest of the week will be at 10mg, followed by a transition to 5mg daily. The current weaning schedule will have me completely off prednisone in a couple of weeks, subject to adjustment based on the amount of GVHD.

Taking the prednisone leash off my immune system could slow the progress of the leukemia, or maybe even start to reduce it, though I don't get the feeling that the latter outcome is likely.

Once I am no longer taking prednisone, and if the number of blasts in my marrow is still too high to make a donor lymphocyte infusion worthwhile, there are a couple of promising new chemotherapy protocols that might make sense for me to try. Both treatments involve outpatient visits to the clinic and were described as well tolerated (minimal side effects).

Like weaning myself off prednisone, the chemotherapy might be enough to give my new immune system the upper hand. 

If not, and as long as the chemo reduces the number of blasts in the marrow sufficiently, then we might try a donor lymphocyte infusion. A DLI is yet another way to tip the scales in favor of the immune system, again with the risk of triggering too much GVHD. When my sister donated stem cells, the team also collected lymphocytes and froze them, just in case we needed them at some point in the future. I guess it's good to know my medical team was more prepared for a relapse than I was.

Along with a rough plan, we got the following news:

• My platelet count did not fall between Thursday and today, which meant I did not need a transfusion.
• There are no blasts in my peripheral blood, which suggests that the blasts are not proliferating as rapidly as they might.

I'm also delighted that I don't need to pack a bag for another hospital stay in the immediate future. This is what passes for good news, under the circumstances. We'll take it.

Inside the Silver Lining, a Dark Cloud

On the outside, encouraging news. My skin rash was nearly totally under control, my muscle contractures were gone, and I was gaining weight. In other words, I was getting over the GVHD.

Inside that silver lining was a dark cloud. My 180-day biopsy preliminary results show that the leukemia has returned. (The other results that take longer won't change this conclusion. They will just provide additional information about the extent of the return.) This was not a surprise, given the recent downward trend in blood counts, but I didn't have to face it and cry about it until yesterday, because it wasn't confirmed.

The two events — GVHD goes away, leukemia comes back— are, I assume, linked. Given a choice, I'll take the GVHD, thank you.

Jan and I are going up to Chicago Monday to talk about next steps: maybe trying to trigger graft-vs-leukemia; maybe another transplant, perhaps with a different donor; maybe something else we haven't heard of previously.

After the first transplant, I was thinking "cured!"

After the second transplant and the clean report card at 100 days, I was of course hoping for long-term remission but mentally prepared to fight again in a few years, perhaps when treatments were more effective and less dangerous. Instead, we're back at it six months since I left the hospital and four months since I was able to come home.

These recent months of nearly normal life have brought me a lot of simple joy, and I am grateful for that. It's painful to think about merely going back into the hospital, let alone the other darker possibilities.

I was trying not to think of the elephant in the room, without success. But even if you manage to avoid thinking about the elephant in the room, it can still crush you.

Trying Not to Think of the Elephant in the Room

I had several tests on Monday: pulmonary function, blood counts, and a bone marrow biopsy.

My pulmonary function test results are very good. Volume, diffusion... all indicate that my lungs are doing well and that my blood is taking up oxygen as it should.

My blood counts are not so positive. My platelets continue their steady decline, and for the first time in months my white counts have also slipped below normal. The hemoglobin counts are fine, which is consistent with my pulmonary function results. The neutrophil count is good, providing decent infection protection. The low platelet numbers are not a surprise, since my legs are covered with tiny red dots and larger red spots, both signs that capillaries just below the surface of the skin are leaking.

Why are the counts dropping? We don't know. The last time I visited my doctor, she said she didn't know. My doctor is currently on vacation, so I was seeing an APN, and she wasn't inclined to make a guess. She did say that she didn't think sirolimus was a likely culprit, an earlier hypothesis, since it has been quite a while since I stopped taking it.

What other explanations are there? GVHD, though my symptoms have been receding. Or an autoimmune response that targets platelets, which is supported by positive tests for platelet antibodies. Or the return of leukemia.

I don't want to think about the last possibility, but I can't help it. It is not my doctor's style to hide bad news, but maybe she has chosen to spare me a disturbing suspicion until she has actual news to talk about. I'm disturbed anyway.

I would be on edge even without the negative blood counts, since I am waiting for biopsy results. The edge has been sharpened by the last few blood counts and the recent don't-know-what's-going-on stance of my caregivers.

I have another blood test tomorrow, and I may get preliminary biopsy results today or tomorrow. Depending on the results, I will either be tentatively relieved (while awaiting the more comprehensive results in early July) or forced to think about what I am unsuccessfully trying to not think about.

Blueberries

I started the day picking blueberries in the backyard. We have three small but mature bushes, which have been producing about a half cup a day for a couple of weeks now. Unlike last year, the birds are leaving the berries for us. The bushes would be more productive if properly pruned, but I've been otherwise occupied during the last couple of winter pruning windows. If I skip a day of harvesting, I bring in a cup and share them with Jan and Paul.

A half cup a day isn't enough to make a pie, but it's enough to make a classy upgrade to breakfast. I don't know that I could tell the difference in a blind taste test, but it seems like the berries I bring in from the backyard taste better than any other blueberries. I do know I enjoy them more

It's been fairly quiet on the medical front for the last several weeks. I continue to have little bit of rash and dry skin. The contractures (muscle and tendon pain) have been diminishing. I did call my doctor once, after a bloody stool, but it ended up being an isolated incident, and I didn't need to go up to Chicago for testing.

At my last appointment, my platelets were down from the previous visit, after a long stretch of climbing. Why? Who knows? My next appointment is Monday, and I'm hoping the platelets are on the way back up again.

Graduation

Older son Jake graduated from Haverford this past weekend. It was everything a graduation should be: beautiful weather, family, and a graduate who has found a passion to pursue and who got about as much out of the college experience as it is possible to get. Money well spent!

The medical, blog-related aspect to this event is that I got my doctor's permission to attend. Crowds are dangerous, but much of the activity was outdoors and I was able to surround myself with a lot of fresh air. My father flew out to Champaign so that we could drive to the Philadelphia area for the graduation, since plane travel is still off limits. (A hundred people in a sealed container for a couple of hours — not a good idea for people in my condition.)

Not much to report otherwise, medically. My blood counts from a week ago Monday were very good, with the platelets jumping nicely from 38 to 61 in a week. A large amount of rash, but that has since moved into and through an extraordinary amount of shedding, and currently all seems quiet on the GVHD front.

Not Quite Ready to Run

Last summer, I was training to run a 5K in the fall, and my training was on track for something in the neighborhood of 30 minutes. My leukemia, however, had other plans.

These days, I walk almost every day, but not very fast. Weakness is part of the slowness, but the main issue is neuropathy, or nerve damage. I have had some mild peripheral neuropathy since last spring, in my feet. It showed up a month or two after my first transplant, a slight numbness in my toes and forefeet. Neuropathy can be a delayed side effect of chemotherapy, and that probably explains mine. Last summer, my neuropathy was mild enough that it had no effect on my mobility.

During treatment leading up to my second transplant, which featured four rounds of chemotherapy, my neuropathy got noticeably worse. My feet were more numb than before, and a mild numbness extended past my ankles and partway up my lower legs.

I have received different answers from doctors about the future of the numbness. My doctor says it's unpredictable. Another doctor said it usually heals, but very slowly. A third said he's never encountered a leukemia survivor who complained about numb feet. I don't know whether this means that it eventually resolves, or that his patients have all been relatively sedentary people who don't care about numb feet, or that when you survive leukemia you just don't get that worked up about your feet being numb.

I am bothered by it, because it prevents me from running. There is the lack of perception, which makes for unsteady foot plants. Worse, I don't have full muscular control over my feet. My right foot, in particular, has recently started slapping down with each step, especially when I try to walk fast. I also can't raise my right forefoot past the 90 degree point, which makes it easy to stub my toes on flat surfaces.

This past Illinois Marathon weekend included a 5K on Friday night, and I entered it. My goal for the 5K was to break an hour, slightly faster than 20 minutes per mile. Walking with me were Mara, my father, and Jake. Once upon a time, I used to line up on the very front line of 5Ks and occasionally win them. This time, we started at the back. Not near the back, but at the very nobody-behind-us back. It's a different look.

And off we went. Step, slap, step, slap, passing a lot of people. We didn't time the first mile. The second mile was around 16 minutes. (Once upon a time, I would have already finished a 5K by the time 16 minutes had passed.)

With about a half mile to go, I was still feeling good. Step, slap, step, slap. I tried a little bit of jogging, about 20 yards. It felt good — easier than walking. After some more walking, another interval of jogging, cut short by a spectacular tumble as my droopy right foot caught the pavement and spilled me hard onto the concrete. 

An EMT who happened to be walking at my pace stopped to tend to me, and another walker offered some wipes to stanch the bleeding from my hands. My knees and right ribs hurt, as did my right ankle. After sitting in the middle of the street for a few minutes, I was ready to finish my 5K, with my hands wrapped in wipes and a sore ankle adding to the unevenness of my gait. 

I crossed the finish line in 55:18 (17:48 pace, 153 out of 168 in my age group). 

Dad, me, and Mara at the finish. I am the one
holding the wipes. Jake is just off  the left edge
of the image. (Photo credit: Brightroom)

Post-transplant PR! Then I headed straight to the medical tent, providing just about the only action they had all night. The medical volunteers joked as they washed and bandaged my wounded hands that Jan sent me there to test their readiness.

The price for my first running steps since September was bruised and bloody hands; bruised shoulder, ribs, and knees; a sprained ankle; and a scolding from my doctor.

The sprained ankle a few days later, swollen and bruised.

Worth it!

Family Matters

We had a wonderful weekend. My parents and both sisters came out from the Boston area. Older son Jake gave up one of his last weekends at college to be in Champaign, and younger son Paul gave up being a testing-the-limits teenager and instead went with helpful and pleasant young man. Cousins Aimee and Jess came down from Chicago. Brother Karl couldn't make it, but his wife did her part by continuing to challenge (beat) me regularly in online Scrabble (most of the time).

The occasion was the Illinois Marathon, of which Jan is one of two co-directors. I am on the race committee as the webmaster, plus other duties as assigned. The race is in its fourth year, and it is a very big deal in our little Midwestern community.

The weekend was a chance for my family to share in the excitement and to help out as needed. And we put them to work: parking, hospitality suite, race number pickup, portapotty line wrangling, sag wagon driver... When they weren't volunteering for the race, my parents and sisters worked through a list of yard work: pruning, weeding, mulching... The yard looks great! We also got a black bean soup and a blueberry pie out of the sisters.

It was so nice to have my family here all together, for fun, rather than one by one to look after me as they have so often since the start of 2011.

Most enjoyable of all was to watch Jan in full event director mode. She and her co-director have built a great team that puts on one of the best marathon weekends in the country. The whole team works hard, but Jan and Mike outwork everybody else. An event of this size is not just a weekend or weeklong commitment, either. The planning and the work go on all year, building to a crazy peak over the final month.

And, for the last two years, Jan has managed to do this with one hand tied behind her back: a sick husband stuck in Chicago for months at a time and unable during those times to help much with the race, or household chores, or parenting.

It's a little scary to think of what Jan will do when she is able to put even more of her energy into the race next year. Can't wait to see it.

Notes from Monday's appointment:

• My weight continues its steady increase, up 2 pounds in the last week, for a total of 19 since the low point a month ago.
• Platelets are on the way up (32 the previous Monday, 30 on Thursday, 38 this past Monday).
• I am still in the study I thought I was dropped from, since the protocol includes "stop taking the sirolimus if it looks like it's doing bad things to you." When my platelets reach a safer level, we might resume the sirolimus at a very low dose. Or maybe not.
• I tested positive for platelet antibodies, which alone could explain the drop in platelets. However, given the way my platelet count has correlated with my sirolimus dosage, my doctor thinks it is more likely a combination of the antibodies and the drug that is responsible.

Start With a Smile

I have noticed that I smile when I wake up in the morning. It's not the result of a conscious thought, and it happens every day. It's a quick, small smile, a ripple on a pond hinting at an unseen fish.

Notes from yesterday's doctor's appointment:

• My platelets are significantly down, again. The last four readings have been 105, 96, 46, and 32. (150 is the start of normal.) 105 was the peak of a consistent increase since my transplant, and 96 was the first reading after starting sirolimus to combat GVHD.
• Sirolimus causes reduced platelets in 30% of patients, so it's a likely culprit, and I will no longer be taking it. If this change causes my GVHD to rage, I may start taking tacrolimus (ProGraf) again. I took tacrolimus after each transplant. The two drugs are closely related.
• Everything else is good: weight's up, hemoglobin and white blood cell counts normal. I have less rash than last week, though it still pops up here and there. Yesterday, I had an intense outbreak on the backs of my hands. Bright red and painful. Today, it's gone.

In Remission

It has taken me a couple of weeks to realize that all those perfect numbers from my last bone marrow biopsy mean that my leukemia is in remission. That two-word phrase is very useful for providing a short answer to people who ask about my health. It captures both having achieved the treatment goal while acknowledging the potential impermanence of the new state.

Notes from yesterday's appointment:

• I have traded diseases, leukemia for graft-vs-host. I consider this an excellent trade, like trading a homicidal roommate for one with some extremely annoying habits.
• My platelet counts fell dramatically since the previous week. This may be due to ongoing GVHD, but my doctor isn't sure. She tells me not to worry about it, and she tells me she knows I will anyway. She's right. Next week, we will do blood tests to look for causes.
• My doctor says few patients do as well after their second transplant as I am doing.

In remission. Weak, with a confused and misguided and suppressed immune system that provides woefully inadequate defense against infection while still managing to mess with my skin and who knows what else. But in remission. Sweet words.

In the PredniZone

I am two and a half weeks into my own personal Steroid Era, and it's great!

I started taking prednisone 18 days ago to manage out-of-control graft-vs-host symptoms: dramatic weight loss (despite 3000 calories per day), persistent full-body rashes, and muscle and tendon pain that prevented me from fully extending my arms. I needed help opening my special drinks (Boost, Ensure). I was also generally weak and tired.

Since beginning the new medication, I have gained about 14 pounds! A couple of days ago, for the first time in months, I had no active rash! My arm muscles are still tight and painful, but I can fully extend them! Recently, I opened a Boost drink without even using my special rubber gripper cloth!!!

Any downsides? Well, I'm writing this at 3 in the morning. Difficulty sleeping is one of the common side effects, along with increased appetite (check), feeling of a whirling motion, indigestion, increased sweating, mood changes, nervousness. Two out of seven isn't bad, especially when one of them (appetite) is a benefit at this point.

Maybe I should count mood changes, too, but I think "mood changes" would be ups and downs, whereas I'm just up.

I read that an "exaggerated sense of well-being" is listed as one of the serious side effects requiring medical attention. So if I get too excited about walking down the stairs without holding the railing, or too pleased with myself for how my Asian cole slaw turned out — and who wouldn't pat himself on the back for going all out and toasting the sesame seeds and the slivered almonds? — we might have to call the doctor.

In the meantime, I'm going to enjoy being in the predniZone.

Celebrate?

Last summer, my 100-day biopsy provided the first indication that I was relapsing after my transplant, leading to a longer and and more difficult road to a second transplant. The second time through has been harder in many ways, physically and mentally, and that difference extends to the recovery.

One hundred days after my first transplant, I weighed around 190 and I was training for a 5K. I was working well over 50% time. My hair had come back.

One hundred days after my second transplant, I weighed less than 155 and I am not able to run at all. I am working less than 25%, and I can't open the dryer with my right (dominant) hand or jars with any hand. And my skin keeps falling off.

But...

Where it counts, I'm way ahead of where I was at this point the first time. Yesterday, I got the results of the 100-day bone marrow biopsy for my second transplant.

Out of 400 cells examined, none carried the deletion-7 genetic marker of my leukemia. 0%!
Out of another 400 cells, all were XX (and therefore from my female donor). 100%!

Perfect scores!

My blood counts continue to be very good as well, and I have started gaining weight since beginning prednisone a week ago. And while I still have some new rashes, the percentage of body in a rashy state is lower than it was a week ago.

This is all great news. In fact, it is the best news I could have received regarding my leukemia.

But...

I thought I would be in a more purely celebratory mood if I got this news. Instead, I'm happy, for now. I'm beating leukemia, for now. This is a big difference between rounds one and two. I've gone from thinking of leukemia as something you can beat to thinking of it as something you can beat, for now. 

If you're lucky, it stays beaten for long enough that if it comes back, the treatments have improved so much that beating it again has become routine and precise and effective and a lot less dangerous to the patient. And, eventually, something else kills you, years down the road. Victory!

In the meantime, I am celebrating, in my way. I live for now. I literally stop and smell the flowers. I don't care what passersby think of the bald man sticking his nose into every flowering tree and shrub he can find. When Jan and I take evening walks, I try to track down the various perfumes that waft our way. It's been a strange spring, with lots of blooming schedules pushed earlier and on top of each other, but it's been a great spring for a guy with a nose that's hungry to smell them all.

Attacking the GVHD

My dramatic weight loss and widespread skin rash convinced my doctor that it was time to address my graft-vs-host disease directly, so I started taking prednisone on Tuesday. I will begin taking sirolimus next week. Both drugs are immunosuppressants, so I will have an increased risk of infection.

Also, I will be suppressing some (maybe all) of the anti-leukemia behavior of my donor cells. I have to hope that they have done what they needed to do — I will get my most recent report card in a few days, when I get the results of me last bone marrow biopsy.

The fact that it was the 100-day biopsy that brought the first bad news after the last transplant makes me apprehensive. The fact that I have had significant GVHD after this transplant makes me (and my doctor) hopeful.

My weight loss has stopped, and my appetite is better, in the days since I started taking prednisone (a steroid). I can't say the rash has improved much. It no longer covers half of my body, but that change had already happened before I started with the new medication. It feels like I'm chasing it around my body with ointment — it's clearing up on my chest and legs, but getting worse on my arms.

My weekly blood tests have been very good. White blood cells and hemoglobin are at normal levels, and platelets have climbed slowly but steadily toward normal.

I Have a Weight Problem

The last time I saw my doctor, the main task she assigned me was to gain weight. Don't worry about eating healthy foods, have as much ice cream and french fries as I can tolerate, and put on some pounds.

I have lost weight. I think I went into this second of treatment, back in October, weighing in the mid-180s on a 6-foot frame. It fluctuated a lot while I was in the hospital, with some extended periods during which I couldn't or didn't want to eat, and other periods when I was pumped full of IV fluids.

Since leaving the hospital, I have mostly weighed in the mid-170s (fully clothed, including shoes, wallet and cell phone) during my clinic visits. Recently, my clinic weigh-ins have been trending down to 170 and then below, which is what prompted my doctor's orders about 10 days ago.

Since then, I have been tracking my daily food intake using an online program. 2000 calories per day should maintain my weight, under normal circumstances. I have been eating 2500 to 3000 calories a day, which should add between 1 and 2 pounds a week.

At the clinic yesterday, I got on every scale I could find, and I weighed between 160 and 162, a loss of 5 to 7 pounds in 10 days. Our scale at home (naked weight 155, down from 161 a week before) yields a comparable weight loss. Maybe I am a little dehydrated, but it's clear I am not gaining the weight my caloric intake would predict, and clear I need to take in vastly more calories than I have been. Roughly 5000 calories per day should be enough to maintain my current weight!

My doctor has mentioned that GVHD can speed up the metabolism, but this seems extreme. Apparently,  any time I have left between napping and applying ointments will now be spent preparing and consuming food.

= = =

Update: To avoid large surprises at weekly weigh-ins, I now weigh myself daily.
Friday: 155
Saturday: 153.5
Sunday: 152

Not encouraging! Those numbers suggest it would take around 8000 calories per day just to hold steady. I need to set up a cot and sleeping bag at Denny's.

Spring?

The calendar says Spring arrived yesterday. The bulbs and flowering shrubs and trees say Spring arrived weeks ago, about a month ahead of schedule.

Meanwhile, inside, we're having a taste of winter. I'm having another round of swirling joe-flakes, as my latest bout of skin rash has progressed to the peeling/shedding/molting phase. The rash was worse, so the peeling is worse. My doctor has described the GVHD skin rash as similar to having a chemical burn, and it feels like I think that would feel this time.

It's especially bad on the palms of my hands. There's an entire layer of dead skin to get rid of, as if I had dipped my palm into molten wax, except I can't just peel it off. It can only come off when it's ready, or, more importantly, when the skin underneath it is ready, to avoid infection. My hands feel sunburnt.

The palm peeling process takes days. First fissures form at the lines that a palm reader would read. Then the skin turns yellow at the edges of the fissures and starts to peel away from the new skin underneath. It's tempting to pick at the jagged edges, even though I shouldn't, and I'm not good about resisting the temptation. After two days, my palms are about one fifth peeled.

I got a prescription for a stronger topical steroid yesterday. It is a creme that comes in minuscule tubes clearly intended for a small, localized rash and not a rash covering 60% of the patient's body. It takes a long time to apply the creme, several times a day.

Tomorrow I have a bunch of appointments in Chicago: dermatology and oncology to look at my rash, a pulmonary function test, and the famous 100-day bone marrow biopsy. After the first transplant, it was the 100-day biopsy that brought the first indication that all was not rosy, which started me down a rocky road to the second transplant. There is reason to hope for better news this time, in particular because of the GVHD that's tormenting me after this second transplant.

I have mixed feelings about the summerlike weather we have been having: sunny, highs in the 80s, evening temperatures in the 60s or even low 70s. The warmth and sunlight and early flowers lift my spirits, and my spirits can use the lift. The downside is that I want to but cannot get out into the yard to mulch and weed and prepare planting beds. Yardwork is prohibited — too many malicious molds out there.

I do get out for nightly walks with Jan, which are uncharacteristically sultry and floral for mid-March. On balance, the summer weather is a good thing.

The Skin War Continues, With Other Skirmishes

I haven't been as (literally) flaky for the past week, because I have been more aggressive with the ointment. I am now applying the ointment twice a day, once in the late morning (my sunbathing time) and once before going to bed.

However, I think I'm losing the rash battle at the moment. When I was first prescribed the steroid ointments, a few applications cleared up the rash. Now, despite the twice daily ointment, the rash remains on my arms and legs and elsewhere. Sometimes it itches, and sometimes it hurts.

It is especially bad on my hands, which are red and swollen, and the skin is cracking. This makes it hard to a do lot of things — prepare food, use a computer, brush teeth. Not impossible, but definitely uncomfortable.

Adding to the rash's discomfort is muscle inflammation, mostly in my arms. If I extend my arm to, for example, remove a glass from a cupboard, I get a sharp, searing pain between my armpit and my elbow. When the nurse tried to take my blood pressure at the clinic last Monday, the constriction from the cuff was so painful I tore it off. Some nights, it's hard to sleep because there are no comfortable positions for my arms.

I also have some numbness running up my arms, though I can't tell whether it's related to the rash or the muscle inflammation. It could also be a delayed side effect of chemotherapy. The inflammation is probably another graft vs host affliction. Hooray.

I might be reaching the point where we need to treat the GVHD systemically, even though doing so would interfere with the graft vs. leukemia that we hope is happening. As in so many aspects of dealing with leukemia, there are tradeoffs and often no right answers.

At War With My Skin

I mentioned a few weeks ago that I had a rash caused by graft vs. host disease (GVHD). I still have the rash, off and on. It is rarely itchy, but it does lead to dry skin, all over. Very dry skin.

How dry is it?

It varies, depending on the day and how recently I have applied my various ointments.

On a bad day, I notice flakes of skin falling into my food as I eat. When I take off my shirt, the flakes swirl around me as if I were inside a snow globe. The joe-flakes settle around me on the couch in drifts.  I feel like the Peanuts character Pigpen, surrounded by a constant cloud of dead skin. It's disgusting.

To prevent these blizzards, I have a full assortment of ointments and cremes, both over-the-counter and prescription. When the rash stopped being itchy, I switched from the steroid ointments to the OTC variety. However, they weren't keeping up with the dryness, so my doctor switched me back to the topical steroids. The problem with dry skin, aside from the gross-out factor, is that the skin is a significant  barrier against germs and other microbes. If it gets so dry that it cracks, those cracks open up a whole new front in the fight against infection.

While the dry skin is gross (and dangerous), prevention is also unpleasant. The ointments are based on petroleum jelly, so they don't work into the skin like a creme or lotion. They just sit on the skin, glistening and slimy. Since the rash is all over, I need to apply the ointments all over: feet, legs, groin, arms, hands, torso, face, scalp.

If it's a sunny day, I spread a beach towel in front of the patio door and lie in the sun for a while in my running shorts, pretending I'm at the beach. This is as close as I'm going to come to sunbathing for a long time, maybe for years, due to long-term skin sensitivity for stem cell transplant patients.

Eventually, I need to put on a long-sleeved shirt and long running pants so that I can move around the house and sit on furniture without greasing it up. The clothing sticks to the ointment, leaving me feeling clammy. Yuck. But better than getting an infection because I let my skin get too dry.

Not only is my skin dry, but so is my mouth. This is also a GVHD manifestation, as the disease can attack the salivary glands. The dry mouth makes eating some foods challenging, especially bread and cookies and similar stuff. If I'm not ready with something to drink, I end up with a chewed but unswallowable mass of food in my mouth. Yum.

So, woe is me. I'm either flaky or oily, and my mouth is a dysfunctional desert. All of this makes my doctor very happy. She keeps reminding me that I had none of these symptoms after the first transplant, which did not lead to remission. GVHD indicates that my donor cells contain T-cells that treat my own skin cells as the enemy, which is bad, but which increases the probability that my donor cells will also treat any leukemia as the enemy, which is good.

(Eventually, researchers will figure out how to give a leukemia patient T-cells that only attack leukemia.)

There's no predictability to how long the GVHD will last. Days, weeks, months... who knows. As long as it's going on, I'll be lubing up and both cursing and thanking my new T-cells.

Late Birthday Presents

Today's regular Monday checkup was scheduled for 2:30, and we got there well ahead of time so that I could have my labs drawn enough in advance that some results would be ready by the time we met with my doctor. We were through with the lab and in the waiting room by 1:30.

I take advantage of the extra time to get in a walk, up and down the corridor. It's actually a scenic walk, with attractive architectural features, looking out over an airy atrium.

My mom inquires whether I could have my monthly inhalation treatment while waiting. A nurse goes into the back to check and comes back with a negative answer.

I finish walking at 2:20 and join my mom in the waiting room. It's clear my doctor is running late, based on how many times a nurse comes out to talk to people other than me about how there isn't a room ready yet.

Around 3:15, a nurse calls me in and takes my vitals.

The doctor comes in around 3:45. "Do you want some good news?" Always.

She hands me a sheet of paper with the results of the test for "deletions of 7q31 and loss of chromosome 7," which is the genetic marker of my leukemia. Out of 400 cells, zero cells had the marker.

"Do you want some more good news? Actually, it's all good news today."

The next sheet contains results for the XX/XY breakdown of cells in the marrow. Out of 400 cells, 399 were XX (donor cells from Mara). One lone male cell does not concern my doctor.

In addition to those pieces of good (great) news, my main counts are stable, my organs are functioning normally, and I'm slowly gaining weight.

All of which adds up to: I get to go home, somewhere I haven't been in more than four and a half months.

Then my doctor is surprised and annoyed to learn that I hadn't done my inhalation therapy (to fend off pneumonia) during my long wait to meet with her. Her recollection of her conversation with the nurse was that she emphatically stated I should take my therapy before my appointment, not after. Anyway, I have an anticlimactic post-appointment appointment with a mask hooked up to an oxygen tank and a small vial of vile liquid, and we don't leave the clinic until 5:00.

= = =

And now I am home! It's great to be here.

Now Playing With a Full Deck

(I'd like to thank childhood friend Peter for the title. And my mother and father, without whom this would not have been possible. And... what? The playing-off music already?!)

My birthday was last Thursday, February 23. I made it to 52.

On Monday, my friend Jeff drove me to my weekly check-up. My doctor gave me a report of steady blood counts and an overall thumbs up for how I'm doing. She did not give me preliminary biopsy results (I'll get them tomorrow) or permission to go home, yet. She did give me, in case I had forgotten, another reminder that getting here was far from certain.

How far from certain? I believe her words were, "You are a miracle." Huh. I have to give her credit for communicating enough of the gravity of the situation, back in November, that I had a reasonable sense of what I was up against, without making the odds seem so bleak that I might lose hope. Not being a believer in miracles, I don't know how I would have handled being told something that amounted to, "You need a miracle." Probably not well.

Fortunately, you don't have to believe in miracles to be the beneficiary of one.

The rest of the week brought my mom; chocolate chip cookies, chocolate cake, candied ginger, and chocolate-coated ginger; and cards, calls, and countless e-mails and Facebook messages, confirming, inescapably, that I am again the same age as Jan — that would be 52, Jan — and I don't get to use my stupid "cougar" joke for another year.

Looking forward to it!

Valentine's Week: Birthday Thursday

Thursday, February 16, was Jan's birthday. Her best friend, Maggi, sent her a very dense chocolate brownie cake and an elaborate balloon bouquet. (No flowers allowed for post-transplant patients.) Only one balloon died in the while being liberated, with a knife, from the plastic bag keeping them all together. She also got some candy and some tea and cards and calls. I got her a ... um ... I owe her.

Jan's birthday is my opportunity to remind her that she married a younger man. "Cradle robber" doesn't really apply, since I'm not that young, so these days I go with "cougar." A week's difference in our ages doesn't really qualify, but that doesn't stop me.

Turning 50 hadn't been so bad, but Jan wasn't that happy about turning 52. I, on the other hand, am quite happy about it. As they say, getting older beats the alternative.

Valentine's Week: Nose-talgia Tuesday

Tuesday is Valentine's Day. We celebrate by returning to the clinic to meet with the ENT surgeon who excavated my sinuses a couple of times back in November. I don't know what we're going to do today — could be just a chat, could be a scoping. I'm hoping for a chat.

It's a 12:15 appointment, but the doctor is running well behind schedule. I fill out a questionnaire, including a review of my medications. I get in some walking while waiting. A nurse then calls me into a room, takes my vitals, and reviews my medications on the computer.

Then a doctor comes in. I remember him from my hospital time. He asks a bunch of questions about my sinuses. He also reviews my medications. (I also reviewed my medications during my clinic visit on Monday. They're very thorough about the meds!) We are then shepherded to another room, and the doctor says, "You can see from the tower what you're in for." This means I'm getting scoped. He speaks softly, in a tone that I think he intends to be comforting. It doesn't work.

He numbs my sinuses by spraying something into each nostril. It drips down the back of my throat, tastes terrible, and numbs my throat to the point that it feels like I can't swallow. "This will wear off in half an hour," he tells me. He leaves.

My wife and I continue waiting, wondering if the surgeon is going to show up before the numbing effect is gone. About 20 minutes after the spraying, she enters, sprays some decongestant up each nostril, and gets right to it. Jan was prepared to leave, but the surgeon assures us nothing upsetting is going to happen. I know that should relax me, and in fact it goes quickly and doesn't hurt at all, but I notice that I am clenching very tightly some gauze pads they gave me to wipe my nose after the spraying.

The scope is a stiff, narrow metal tube with a light and a camera at the tip. The camera image feeds into a monitor on the tower next to my chair, and the surgeon is taking pictures and conducting a guided tour of my sinuses for the nurse, and maybe for Jan, but Jan has her head turned and her eyes closed, as do I. "This is where we took out [some bone]. Look how nice and open it is here. And over here ... Hmmm..."

Hmmm? What does that mean?

At the end of the tour, some pictures spill out of the tower and land on the floor, a sequence of circular images, mostly pinkish and fleshy, the "After" photos for the makeover of what used be Joe's Fungal Chambers of Horror.

Meanwhile, the surgeon sits in a chair and fills out a form with her findings. I'm still wondering what Hmmm meant when she looks up and says, "I'm very happy." In that case, so am I! Everything looks good to her. Yay! Pointing to some of the current photos, she tells me that some of my corresponding "Before" photos are posted for other surgeons to see, for educational purposes. Um... yay?

"That was a scary time," she says.

(Yes. When your oncologist tells you you're entering "think about how you want to spend what might be your last few weeks" territory, that is a scary time.)

The surgeon continued... Some ENT surgeons would not have operated on me, due to my lack of an immune system and platelets at the time. Luckily, she was the surgeon on call the night it was determined that I had the fungal infection in my sinuses. And, luckily, her résumé included several years working at a hospital with a lot of transplant patients, so she was used to, as she put it, just "hanging some bags" (of platelets, on the IV pole) and going in. In cases like mine, waiting until the conditions are right for surgery saves a lot of work, because the patient dies.

But they didn't wait back in November, and I get to celebrate Valentine's Day with my Valentine.

Valentine's Week: Cowboy Monday

Jan, my favorite minder, is here this week. It's the first time we've been able spend days and nights together in four months. This is good!

On Monday, we go to my weekly appointment with my doctor. My blood counts are roughly the same as the week before, and probably a little suppressed by GVHD. My rash has mostly faded, so my doctor decides it's time to poke the hornet's nest a little. She describes what I'm going to do as tapering my immunosuppressant, although skipping one day, taking it one more day, and then stopping altogether seems too abrupt to be called "tapering." In any event, we are discontinuing the drug more than a month earlier than the typical schedule.

On the other hand, I already have (just barely) sub-therapeutic levels of the medication in my blood, so in that sense stopping completely might not be a drastic change. It might be enough to trigger another round of GVHD — maybe of the skin (symptom: rash), or of the intestines (symptoms: diarrhea, cramps, vomiting), or of the liver (symptom: jaundice [maybe vomiting, too]).

My doctor reminds us that a little GVHD is good, not for its own sake, but because it indicates that my donor cells include some T cells that recognize me as "other," which offers hope they also recognize leukemic cells as "other." On the other hand, as she further reminds us, too much GVHD is life-threatening, and I don't need any more of that. If any of the symptoms get too serious, I can go back on the immunosuppressant and/or take some steroids

When do I get to go home? Not yet. My doctor would like to see how I handle the medication change. She even seems a little superstitious, as if going home is asking for trouble, the way not having an umbrella causes rain. All I know is that I am one day closer to going home.

When the nurse stops by near the end of the appointment, my doctor tells her she's taking me off the immunosuppressant. She says something like, "I'm being a bit of a cowboy."

Giddyup.

Ambling Along

Monday's appointment was upbeat.

My blood counts were a little lower than before the weekend, but that can be caused by either GVHD or sampling error. My doctor seconded the earlier visual diagnosis of my rash being GVHD, saying it had a classic appearance. By then the rash was still visible over much of my body, but it wasn't itchy enough to cause me to lube up, and it has continued to subside.

A week ago, on Thursday, the transplant team had discussed my case and was preparing to take me off the immunosuppressant drugs in order to trigger GVHD, possibly as soon as this week. On Friday, I showed up in the clinic with GVHD, so we're going to stick with the current dosage.

I am no longer getting magnesium supplements, which are given intravenously, so I will have my PICC line removed this coming Monday. This will be a big step toward normalcy. I can forget about the line dangling out of my arm for long periods of time, but it creeps into my consciousness at night when I change sleeping positions, and it makes showering difficult because it has to be kept dry. I won't miss it. Potassium levels are also OK, which means one monster pill a day I no longer take.

Today, when I pulled my arm out of my long-sleeved T-shirt so that my brother and I could flush the PICC line, the hairs on my arm — just about the last part of my body to have hair — looked like they were dusted with frost. It was enchanting for the second or two it took me to realize the frost was dead skin cells that had accumulated since I got up in the morning. I assume the rash has caused more than the usual number of skin cells to slough off. (Note to self: Wash the sheets.)

My brother the professor has been my minder this week. For now, he has more hair on his head than I do. He is taking the week between his school's January term and the start of the spring semester to keep an eye on me, keeping up my family's superb support. He does his professor stuff, prepares meals, shops, cleans, and takes walks with me. I do a little work, eat, sleep, take walks. This week's new walk was to get all the way to the lakeshore from the apartment. It was dark, so we got to see downtown Chicago's skyscrapers all lit up, off to the north.

My next minder is Jan, for a whole week. I feel well enough that it should feel like a couple spending time together instead of a patient being cared for by a round-the-clock nurse. Sounds good to me!

Rash Behavior

On Wednesday, I noticed that my face was a little bumpy. I thought it might be all the missing whiskers trying to emerge, in honor of the springlike weather. Speaking of the weather, my mom and I have taken advantage of Chicago's extremely mild winter weather this week to take some lengthy walks.

On Thursday, the skin on my face had a texture somewhat like the surface of a bowl of oatmeal, and the top of my bald head was bumpy, and my neck was a little itchy. During the night, into Friday morning, my neck got very itchy. As did my face, and the top of my head.

This morning (Friday), everywhere that had been bumpy or lumpy or oatmealy or itchy is still that way, and the rash has spread to my lower legs. I call my doctor, who tells me to arrange a visit to the clinic to get it checked out. I get an appointment in the early afternoon.

The first step at the clinic turns out to be lab work. When I take off my fleece to expose my arm for the blood draw, I see that both arms are covered with small raised red welts.

It's itchy and unaesthetic, but I'm thinking it's probably a good thing. One manifestation of graft-vs-host disease is a skin rash, and having some GVHD correlates with better transplant outcomes. GVHD indicates a solid immune response from the graft (donor) cells. If the new immune system is attacking an organ like the skin, the thinking goes, there is a better chance that it is also attacking any lingering leukemia (graft-vs-leukemia). Too much GVHD can be very bad, and even fatal, but a skin rash like the one I have, which is relatively mild, is not life-threatening.

My appointment is with a physician's assistant (PA) who works with the Oncology team. The last time I saw her, she was performing my most recent bone marrow biopsy, and I was about to re-enter the hospital because of my bladder infection.

She checks the skin on my face, back, arms, chest, back, legs... She is confident it's GVHD. She asks about any pain (none), intestinal issues (none), eye issues (a little irritated). If there is a dermatologist available on this Friday afternoon, she would like to get a skin biopsy to get absolute confirmation that this is GVHD, but she determines that none is available, and she's quite sure anyway.

After consulting with my doctor, the PA prescribes a couple of steroid ointments, one that is too strong to use on the face, and a second that I can use on the face. She also recommends an over-the-counter antihistamine for itching, and eye drops.

By the time I get home, several hours later, I'm ready for a nap. I'm itchy, so I take an antihistamine and apply my ointments. Both ointments behave as if they have a petroleum jelly base, and applying them is like applying Vaseline on my head, face, back, and arms.

Unlike lotions, which sink in, ointments just sit grossly, greasily on the skin. If someone were trying to catch me, I would be hard to hold on to. If I were trying to take a nap, and I am, I would feel pretty disgusting, and I do. But I fall asleep anyway.

= = =

Before my appointment was over, I got preliminary lab results. The last three labs (Thursday 1/26, Monday 1/30, and today (2/3) show solid increases in the main three types of blood cells.

White blood cells: 3.6, 4.1, 5.8
Hemoglobin (standing in for red blood cells): 10.4, 10.6, 11.2
Platelets: 59, 71, 84

I think these numbers, and the onset of GVHD, are both good signs.

When talking with my doctor this morning, I learned that the consensus on the transplant team (when they met yesterday) was to take me off my immunosuppressant medication (which would probably trigger GVHD) and do another bone marrow biopsy pretty soon instead of waiting for day 100 as is typical. Now that I appear to have GVHD at the current immunosuppressant dosage, that plan may get revisited.

My Good Luck Charm Comes Through Again

Today I had my regular Monday clinic visit with my doctor. After my last one, two weeks ago, I went straight from the clinic into the hospital to deal with my bladder infection. Since I was in the hospital last Monday, I didn't have a clinic appointment.

I went with my mom, who has been my Chicago caregiver for a week and will be here one more week. Over the course of dealing with this disease, now exceeding one year, my mom has been my good luck charm. When she is visiting, things go well. Maybe it's the cooking.

My doctor came in, smiling and remarking at how much better I looked than I had looked two weeks ago. She told us my blood counts were looking very good and showed us the printout she was carrying: white blood cells at 4.0 (normal), platelets at 71 (low, but enough of an increase to signify improvement instead of noise), hemoglobin roughly the same as last time. All encouraging, but what really matters is the biopsy results.

Then, and this felt like an afterthought, she reached into the pocket of her white lab coat and said, "Oh. I have more good news." She had the results of two tests carried out on my Day 30 bone marrow biopsy — the XX/XY breakdown (because my donor is female, this is a useful measurement of the), and the count of cells carrying deletion 7, a chromosomal abnormality that marks my leukemia cells.

The XX/XY breakdown is 100% / 0%, which is actually a teeny bit better than the corresponding result after my first transplant (99+% / <1%). I am woman, hear me roar!

The deletion 7 test found claims it found a few cells (3 out of 400),  but this is considered a negative (good) result. The test typically has a little noise, and anything under 8 out of 400 is treated as equivalent to zero. My doctor hypothesizes that the testing process itself generates a few deletion 7 false positives. Another way of thinking about it is that my deletion 7 test results are indistinguishable from those of someone with no leukemia.

So, great news! On the other hand, across my celebratory mood lies the shadow of knowing I have received the best possible news before, after my Day 30 biopsy following my first transplant, and it wasn't good enough. On the other, other hand, I can't do any better than I'm doing, so I might as well celebrate — I had sparkling grape juice with dinner.